I am happy to report that I had a really good closure with National Institute of Health which includes National Institute of Mental Health, National Institute of Environmental Health and Office of Minority Health at NIH along with Center for Disease Control.
I have asked (ok harassed) these Federal agencies to address autism in the Somali community for a really long time – years ever since back in 2008. And, they have simply been wonderful.
Where shall I start – back in 2008 when Governor Pawlenty’s health department did its first autism study in Somali kids – CDC folks were the wind beneath my wings. I would literally call them daily or weekly and ask for MDH to do this in a way that was culturally sensitive. Of course, this was much easier with Dr. Magnan in charge who let her researchers take the lead. And, Dr. Punyko is an amazing public health researcher and epidemiologist.
After that study was done, and the new Governor (Dayton – the man who could care less) came into power, I begged more and more for NIH and CDC to do because it was evident Dayton and MDH’s Dr. Ehlinger would not.
To make a long story short, NIMH’s director Dr. Insel took the lead and asked other Federal agencies to come up with a plan. They did which is how the last UMN/CDC study was funded.
NIMH, NIEH, CDC, Office of Minority Health @ NIH and Autism Speaks all financially and with their technical expertise contributed.
The results of this study are very good and a good opening for next steps. But as I told NIH and CDC – I will not be advocating for those steps. First, I am bone tired, it ain’t easy to do autism advocacy, especially at the Federal level. I remember one time I went to IACC and on my way back home – I saw the director of CDC’s disability department, Dr. Boyle in Washington DC airport and I became a used car salesman. Really, I was so busy trying to persuade her to fund and do Somali autism research. She stopped me and said “Idil – are they paging you to go to your gate”. Yes, they were but I was lost in autism advocacy. There are tons of times similar where I would do whatever necessary to get autism in our community addressed at the Federal level. Another time was – Dr. Birnbaum, Director of NIEH was testifying in Congress in a committee co-chaired by Sen Amy K of Minn and I happen to see it on C-Span. I think I must have emailed and called Sen Amy’s legislative assistant a hundred times and kept asking please ask Dr. Birnbaum about autism in Somali community and what they intended to do about it.
Well, needless to say, Andrew probably was so annoyed by me he did and Sen Amy K did ask that question. I mean again I became a used car salesman and had to make the sale by any means necessary. Or when I would call director of Office of Autism Research at NIMH at home and again become a used car salesperson.
Now, as fun as those times were and even successful – I really have no more desire to repeat it. It takes a toll emotionally, mentally and physically. Besides, there are now lots of other Somali autism parents and advocates in Minnesota who I am hoping will continue this important work.
Plus, I think when I told NIMH, NIEH, AS and CDC that I would not be asking or advocating for the next step – they had a big sigh of relief because I am sure dealing with tired and frustrated autism mother is no day at the park.
At any rate, my advice would be for those going to do the next step to ask; why is autism so high in Somali American kids in Minneapolis, and more importantly why is it so severe at a higher rate. This could really open the door for many important autism research into the cause of autism. And, hopefully the cure and prevention of the symptoms of Autism.
I wish anyone who continues this work luck. And, I again thank Dr. Insel – director of NIMH, Dr. Daniels – Office of autism research at NIMH, Dr. Boyle, Dr. Allsopp and Dr. Wiggins – CDC, Dr. Lawler & Dr. Birnbaum – NIEH, Dr. Ruffin – OMH @ NIH and Dr. Dawson from Autism Speaks.
Thanks all very much for listening, validating and taking action!
Somali Autism Study as reported by Dr. Boyle at IACC on Jan 14, 2014
Above words are my opinion
and do not reflect any committee or agency.
Idil – Somali Autism Mom & Minority Advocate